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Genetic testing is 'ethically sound'

11 April, 2011

The UK’s Human Genetics Commission has today published a report stating that there are no ethical barriers preventing the use of genetic testing in couples before they conceive.

The new report compiled by the Human Genetics Commission (HGC), the government’s advisors on genetics, has concluded that there are “no specific social, ethical or legal principles” that would rule out the use of ‘preconception genetic testing’ as part of a population-wide screening programme. This type of genetic testing would look at the DNA of prospective parents before they conceive in order to assess the risk of their children inheriting a range of hereditary conditions.

The report looked at a number of ethical and social issues surrounding genetic testing, such as the need to educate the public so that it could make informed choices if offered screening. Crucially, this report does not mean that a screening programme will be set up in the future, only that it appears be ethically acceptable to do so. Before a screening programme of this type could be launched, the benefits, risks and costs involved would also be examined, as the project might not be feasible or of overall benefit to the public.

What is the HGC?

The HGC is an independent body that advises the UK government about new developments in human genetics and how they might impact on individuals. The Commission has 21 members, who are experts in genetics, ethics, law and consumer affairs. They also consult with a panel of people who have direct experience of living with genetic disorders.

Why was the report compiled?

In recent years, genetic testing and diagnosis have improved technologically, become cheaper and broadened in their potential use. Given the possibilities presented by these rapid changes, the HGC was asked to examine the issue by the UK National Screening Committee (NSC). The UK NSC is a government-funded agency that reviews the evidence regarding screening programmes, and it advises ministers and the NHS on how appropriate they would be for introduction in the UK population.

The HGC was initially asked to provide advice on “the social, ethical and legal implications relevant to whole population preconception genetic screening”. However, the HGC was not asked to look at the logistics of implementing a national screening programme, and the publication of their report does not mean that such a programme would necessarily be introduced. In effect, the HGC has examined whether a national genetic screening programme would be ethically acceptable; other bodies, such as the NSC and the government, would now need to examine whether such a programme would be desirable, feasible or cost effective.

However, the HGC makes some recommendations on the structure of any potential screening programmes, such as stipulating that individuals are given adequate advice and time to consider their options so that they can make informed choices on the matter.

What does the report cover?

Although originally asked to examine the social, ethical and legal implications of a national screening programme, the HGC’s final report is broader in scope. The report focused on:

the ethics of preconception screening - for example, how to avoid discrimination and negative eugenics (the deliberate discouragement or prevention of reproduction in certain groups)

people’s right to reproductive choice

how people should be educated to enable them to make an informed decision on whether to be tested

ways that a preconception screening programme could be implemented, given the ethical issues involved.

Some news sources, such as the Daily Mail, have suggested that the report actively calls for children to be screened before becoming sexually active. This is not the case. The report only sets out the ethical considerations that must be addressed if voluntary screening were to be offered to older children. The report also states that young people should be given mandatory education on the matter before any voluntary testing is performed, and that genetic carrier testing is not normally offered to people under 15-16 years old.

What did the report recommend?

The HGC developed and reported a set of principles to ensure that preconception genetic screening could be implemented in a safe and equitable manner. Among these recommendations were that:

Preconception testing should be available to all who may benefit from it, and individuals should be supported in making informed choices about the options available to them.

For genetic conditions where antenatal carrier screening is offered, prospective parents should be offered preconception screening where technically feasible.

Children and young people should learn about preconception screening in the final years of compulsory schooling. However, if voluntary screening is to be offered to older school children and young people, it will be important to ensure that individuals are not pressured or induced to take tests

Information about preconception tests should be made available from a range of sources, such as IVF clinics, pharmacies, GP surgeries, family planning centres and community organisations.

The development of preconception tests should not affect the treatment and support offered to affected individuals.

Couples who discover that they are at an increased risk of conceiving offspring with a genetic condition should be referred to a health professional who has knowledge of the condition and can discuss all reproduction options.

What diseases could be screened for?

The report does not list specific conditions that would be covered by preconception genetic testing, but the guidelines are based on testing for diseases that are caused by mutations in a single gene (for example, cystic fibrosis). They do not address screening for complex diseases that may have a genetic component, such as those where single or multiple genes may convey part of the overall risk of a condition.

The report did not detail specific diseases that could be screened for, but one of the recommendations suggested that preconception screening should, where feasible, be offered for diseases for which antenatal genetic screening is already offered.

Will these recommendations definitely be adopted?

It is important to highlight that this is a preliminary examination of the ethical considerations surrounding population-wide preconception genetic screening. It primarily looked at whether it would be possible to provide an ethical, equitable voluntary population screening programme. The report did not assess whether one could realistically be implemented.

Before any population-wide preconception screening programmes could be introduced, the UK NSC would need to assess the benefit, risks, and economic feasibility of screening for each condition being considered. This assessment would be likely to take into account public feelings on the matter.

What should I do if I am considering having a family?

People who have a family history of genetic conditions or belonging to an ethnic group at risk of specific genetic conditions can consult their doctors about genetic counselling and the options available when planning a family.

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